We have a mold of her hand and foot sitting next to Freddie’s piggie bank. These shapes were made when her heart was no longer beating, when all the breath had left her body. There was a last time we held her hand; there was a last time we traced her wrinkly toes; there was a last time she was in our arms. I tried to imagine losing her before she was here with us because everything we knew led us to believe we would. There is no imagining; I know that now. And I know the reason: it would be a betrayal of how this feels, how our hearts have actually grown and changed, molded, themselves, by the shape of our missing Bethie.
October is Pregnancy and Infant Loss Awareness Month. We know this pain. October is the month that Bethie left us for heaven; we know this pain so very well. We also know, though, the love that Bethie brought into our life. We have chosen to honor Bethie and all her life stood for by raising funds for The Bethie Roland Fund for Perinatal Palliative Care at Lurie Children’s Hospital of Chicago. They were her caregivers from 20 weeks pregnant to 8 weeks old, but they were her team for life. They loved her and honored our wishes for her life every day she was with us, and this month in particular, we honor the care they provided by asking you to join with us in raising funds to help all children and families live loved lives.
The funds that we are raising at this time will go toward training the NICU team to be the most caring, honest, and dedicated team possible. These particular funds will allow medical professionals to receive training in delivering dire news (and the options that go along with this news) to parents. There is no right way to deliver these words, but there are more compassionate ways, and there are ways that feel more laced with love. These are the words NICU teams need to use. This is the care they need to show.
Brian and I know the devastation, the blinding pain, and the shock that comes during diagnosis and also death. And we know that love can be present above all. We know this because we experienced it. We raise funds in Bethie’s name in the hopes that all families will feel supported. We raise funds because no parents should ever lose a child, but they do. No babies should be born dying, but they are. And we want to do all we can to help these families feel comfort in their choices and find space for love.
We raise funds for the Perinatal Palliative Care Team because in a meeting at 20 weeks pregnant with Bethie and her broken heart, they told us, “We will support you – whatever your choice is.” And when we made our choice to meet her, but keep her at home with us, they replied, “We support you – let’s come up with a plan to make that happen.” And when we moved to CO and left this team, they said, “Here’s how we can make your transition go smoothly.” And when we found a surgeon and he changed Bethie’s life, they exclaimed with hearts full of love, “We are so thankful.”
We want to do our part to make sure that all families are offered the same support in their choices that we were. This is why we raise funds in Bethie’s honor for Perinatal Palliative Care. Without the support of this team, some or perhaps most of the space in our hearts would have been filled with fear, questions, doubt, worry; instead, though, all of the space in our hearts was filled with love – for her whole life. They helped us know our options; we made our own choices. And from 20 weeks onward, we focused completely on how to best love our daughter. This is where our focus remains.